never heard of abdominal rsd
 

So I talked to my pain mgt. dr. and they tell me they have never heard of abdominal rsd and to keep having test to see if anything comes back.

Ugh! I have been with my dr. for almost 4 years now and hate the thought of going somewhere else, but I just don't know how long or how many test a person should go through before they throw in the towel and say "yes, it is abdominal rsd."

Any one with any suggestions welcomed!:confused:

Hey Alt :)

Sorry your doc is refusing to see the blindingly obvious here.....if he knows the criteria for diagnosing CRPS, he should know that the most of the diagnostic evidence symptoms (ie burning skin, temp changes, blood flow issues, thinning of skin etc) would not be visible internally. But the biggest one as far as this goes is that a diagnosis of CRPS can be given in the absence of any better explanation of the patients symptoms. When you can't see what else is going on, and they've done every other test possible, and nothing else is going on (but the pain is persistent and crippling), and most importantly THE PATIENT ALREADY SUFFERS FROM WIDESPREAD CRPS (duh), then a diagnosis of CRPS in your abdominal area seems perfectly logical. To subject you to any more testing just on the basis of a refusal to diagnose something he hasn't done before seems ludicrous.

Maybe someone else on this forum has had a diagnosis of abdominal CRPS, in which case it might be possible to contact their specialist and ask if they have come across abdominal CRPS, and would they be willing to advise your specialist of that fact, along with the symptoms they recognised.

I hope someone can help you soon. Hang in there and don't give up. I hope you can enjoy some of Christmas despite what this disease throws at you.

Bram.

I'm so sorry alt. Changing doctors is a very difficult and hard decision to make...the bottom line is that you need to make sure you give yourself the best opportunity to get the best care and treatment. You don't have to leave your current doctor to get another opinion...hopefully someone can suggest a doctor you could see who is more knowledgeable about CRPS in all its forms (internal and external). You deserve the best care you can get...and you are clearly not getting it right now.

Take care of yourself and I hope you have a good holiday.

Thank you for the reply. I agree with what both of you are saying. I meet with my pcp tommorrow to discuss any other solutions I have. I will discuss getting another opinion as well.

After I had two surgeries on my stomach for endometrioses and an oopherectomy and hysterectomy, I believe I got abdominal rsd. Rsd can spread internally and I have crippling stabbing and burning pain in my stomach that never goes away. I've had it ever since I got my surgeries. I've spoken to my endometriosis surgeon and he said he can't explain the pain and told me to see my pm dr. So I did and they can't explain it either. So I went to my neurologist and she can't explain either. So I went to my gp after going to ER one night a few months ago for severe abdominal pain and a rash and they said they couldn't explain it. The catscan only showed gall stones. So I 'm going to an endocronologist(sp?) to see if I need my gall bladder out. My pm dr said rsd can spread internally as well as externally, but there just not sure. I believe my rsd has spread because I had two surgeries which aggravate rsd. But I will see my endo dr on Jan 22 and am scared to death because of what they might find. I was told I may need to have an endoscopy and will ask to be put under for that. Maybe the gallstones are causing the pain but I believe the rsd is also causing the pain because I have pain in the side of my surgeries and pain under my ribcage and middle of my upper chest too. It feels like pain I have in my other rsd areas. The pain meds I take for rsd help numb the pain a little with my stomach but the pain is constant. A heating pad also helps, though mine just broke on me. So I have to get another. I hope you can find a dr who can help and that you feel better soon. If I were you I would see an endocronologist(sp) to see what they think and maybe another neurologist and pm dr for a second opinion. My thoughts and prayers are with you. Take Care.

Renee,

I am sorry you are dealing with this. I know gallstones can cause similiar pains as you described. I have the exact same symptoms also, but they have found nothing. It seems to be more aggravated after my endoscopy.

I was laying in bed, when my stomach pain woke me this am, and I was thinking maybe i should ask the dr. to see if the radiologist will relook at my ultrasound.

Something is definitely wrong. I also had endometrios, with 2 ablations and then a hysterectomy. but that was 07-09.

I just don't know, just hope it is not rsd or cancer. Both would suck!

Hi Alt, I'm sorry you are still suffering too. Maybe have that ultrasound checked again would be good. And then maybe a catscan. That can detect things clearer then an ultrasound. And then an MRI gives the clearest picture of all. Maybe it's small gallstones or endometriosis, though if you had a hysterectomy, I don't think that is it. Maybe it's abdominal rsd. I'm afraid that the endoscopy I may get will aggravate my stomach more too. I worry about that it's rsd spread or cancer too, but I just got bloodwork done and it seemed that my red and while blood cell count were both normal. Maybe try getting bloodwork done too. Hang in there my friend. I know it's hard not to worry. I cancelled my first endo appt because I got so scared of what they might find that I got more sick from worrying and had to cancel and reschedule. But it's not something you should ignore. It's better to find out what it is so they can treat it then to suffer the pain it's causing and have it get worse. I will pray that you'll be okay and you will be. Just keep the faith. Take care and happy holidays. Thanks also for your kind words to me. From your friend, Renee.

Hi All,
Been reading this thread & it is so agonizing just how much Dr.'s do NOT understand but yet they can act as if they do.
I fight my own battles with that, just not internally (yet).

I'm so sorry you're going thru that. It must be a very scary feeling.
Everything I've read saysthat RSD/CRPS can spread anywhere in the body.
Please keep us posted on how things are going.

Well my primary care says anything is possible. But for now he his starting me on topamax (migraine med) says his brother has irritable bowel syndrome, and his pain dr. Started him on it and it worked. So he wants me to try it.
Also I am to stop taking Zantac and bentyl since they are not working.
I hope it works. Tired of being up at night because of stomach pain.

I hope it helps too. But just be careful. I was diagnosed with IBS many years ago before I even had rsd and found out that I had endometriosis that was found out after my rsd and was let go for so long because my gyno and former gp didn't do the right tests on my stomach, that it ended up spreading to my ovaries, causing cysts and abscesses and years of extreme abdominal pain only to find out after rsd from a new gp who bothered to take a abdominal and pelvic ultrasound and catscan and mri, to find out that I had all of these problems. These problems led to two surgeries over a two hours surgery and a over a six hour surgery on my stomach and a medical bill I don't know how I'll ever pay because my drs misdiagnosed me as having ibs without further investigating. I am still suffering from it because, I believe my rsd has spread to my stomach because of my surgeries.
My new gp couldn't believe that my other drs never did tests to check when I first complained about my extreme stomach pain. I don't want to scare you, but I do hope that you get more than one opinion on your pain just in case it's something more than ibs. I don't want you to have to go through what I did and still am because my drs didn't take the time and didn't take me seriously enough to do their job properly. I hope this dr can help you. My thoughts and prayers are always with you.